This Is MS Multiple Sclerosis Knowledge & Support Community

Erika, how are you doing?

1 year and 4 months later
- I had control venography on January 19, 2011 at Euromedic Katowice - negative, my stent is fine, no intimal hyperplasia, no clots, azygous is fine, right jugular is fine as before
- I had EBV about 4 or 5 months active, I have only one antibody active now
- My 13th MS attack from Dec. 2010 is gone but I think I feel even weaker
- Otherwise I have all symptoms just as before the procedure: fatigue, sleepy, vertigo, left part of my body is worse, often and strong headache, cog fog, problems with short term memory, catching for my breath, high pulse (120-140), panic attacks, anxiety, nerve pain in my right arm (1200 mg Carbamazepin - it helps), nausea, sometimes vomiting, often almost collapsing, sometimes I faint, problems with vision (eye nerves), stress is my big enemy, I am scared to live but not scared to die, I am often very confused, problems with concentration, painfull tensions in my shoulders and neck, I still can walk with one cane just not too long and not everyday, I feel worse in the morning, sensitive to light and noise, I usually spent time alone in my cold room in darkness in silence, heat sensitivity - summer is comming - I am already scared, but we still have water, electricity and heating in our house, I am not hungry and I still have money for LDN (4,5 mg)
Erika

Dear Erika,

Great news on the condition of your stent and veins.
Great news that your EBV is coming under control.
You are in my thoughts and prayers, as always.

~Pam

erika, have you made it to the chiro. yet? i pray you find relief. yes, the fear of summer heat and looseing the fear of death i can relate to. i'm not wanting to push the issue but unless things can get turned around before a certain point i will not fear death. let's not give up. when one door closes another will open even if sometimes we have to find the key.

keep us posted- please.

Erika, I am glad you had another venography done, if only to know. But I wish there had been something there to balloon.

I hope the LDN helps and that the summer is unnaturally cool.

blossom wrote:erika, have you made it to the chiro. yet? i pray you find relief. yes, the fear of summer heat and looseing the fear of death i can relate to. i'm not wanting to push the issue but unless things can get turned around before a certain point i will not fear death. let's not give up. when one door closes another will open even if sometimes we have to find the key.

keep us posted- please.

Yes, I have made the chiro on January 5, 2011. Except others I had atlas misalignment. So far I do not feel any changes.
Erika

Cece wrote:Erika, I am glad you had another venography done, if only to know. But I wish there had been something there to balloon.

I hope the LDN helps and that the summer is unnaturally cool.

Well, I knew from the very beginning the veins are not only MS problem. We just do not know what else it is.
LDN doesn't help me with heat. I started with LDN in November 2008. I have only made little break during my first procedure and during my venography.
That's life...
Erika

Erika, I'm glad to hear that your blood flow if fine, but sorry to hear that it hasn't resulted in better health for you.

What is your impression of it all, what do YOU think about CCSVI and its relationship to MS from your pioneering perspective?

Can you seek help with your anxieties and possibly try medication? That's no way to live with such fears and stress, that makes it all so much worse, my heart goes out to you, I am sad to "hear" the sense of stress in your words. I hope you find some peace somehow, even if it's with meds - you deserve to have happiness and light in your life somehow.

Can I also thank you for being a forerunner? Tremendous thanks as well for continuing to let us know how you are faring. We are all learning from your journey. Thank you for sharing it with us.

eric593 wrote:Erika, I'm glad to hear that your blood flow if fine, but sorry to hear that it hasn't resulted in better health for you.

What is your impression of it all, what do YOU think about CCSVI and its relationship to MS from your pioneering perspective?

Can you seek help with your anxieties and possibly try medication? That's no way to live with such fears and stress, that makes it all so much worse, my heart goes out to you, I am sad to "hear" the sense of stress in your words. I hope you find some peace somehow, even if it's with meds - you deserve to have happiness and light in your life somehow.

Can I also thank you for being a forerunner? Tremendous thanks as well for continuing to let us know how you are faring. We are all learning from your journey. Thank you for sharing it with us.

Well, I am not so 100% sure my blood flow is fine in my left jugular. And I am not so sure about all my vessels in my brain.
As for my impression, I am 100% sure it is extremely important that doctors have had the possibility to test CCSVI procedure on human bodies. I am sure correct blood flow is important for people to say it very simple. I would do it again.
It is a big story with my panic attacks, anxiety and perhaps depression. Some doctors before were telling me that I am completely fine because I look normal and I smile. End of story. Last year I have visited another doctor, she told me after 10 minutes I for sure have panic attacks and other problems and gave me 3 kinds of pills. Oh sh... I was almost gone. My BP was only 90/60. I was not eating, I was not talking to anybody...a real nightmare. The 5th day I stopped all the stupid pills. I called the doctor and she also told me not to take it anymore. I will see her in 3 weeks again. I will tell her this time what pills I am willing to try.
But I also have to admit the big part of my fear is real. Try to come to this country and be disabled...
Erika

hi Erica
i've been having panic attacks and anxiety, went to a naturopath and he got me on l-glycine, which anyone can buy. do some rearch, its an amino acid, and amazing...way better than any drug...powder is cheaper, way cheaper, please try it. good luck!!!!!!!!

esta wrote:hi Erica
i've been having panic attacks and anxiety, went to a naturopath and he got me on l-glycine, which anyone can buy. do some rearch, its an amino acid, and amazing...way better than any drug...powder is cheaper, way cheaper, please try it. good luck!!!!!!!!

Thank you! I have never heard about it. I found enough info on the internet. Yes, it might be for me. I just cannot find anything on Slovak internet - no surprise.
I just got another panic attack right now because it is not cheap for me.
OK, so now help me to take a decision: 1. I will live without electricity (it means no fridge), 2. I will live without heating (I will freeze), 3. I will live without water (no drinking and no hygiene), 4. I will not eat some days.
And please tell me how to explain it to my family.
We usually pay little money for drugs in my country because everybody must have health insurance.
This is another world, Diane.
Maybe I find a way even it means more stress and more headache for me but it is my everyday life
Erika

erica the idea is horrid, but get a roomate...its the only way...
PM me with your address, and tell me a package wouldn't be stolen.
i know my girlfriend here on disability is in the same financial distress. It seems like we get alot of money, but everything is really expensive too.
do take care, erica, i'll see if i can mail it without a hassle.

Heating, water and food all are essential.

Erika, having followed your CCSVI treatment story from your first procedure video (it seems like a long time ago, but it really isn't!), I must commend you for being such a brave, spirited, early-in pioneer. My heart goes out to you when I read your recent posts-- hang in there, and may there be brighter days ahead for you; you deserve them!

Hi Erica congratulation,grate news best wishes for quick recovery
regards
seeva